[Zeph] Hi, welcome back. This is Zeph again. We’re gonna be talking about the Fearless, Tearless Transition Service. 

About the Fearless, Tearless Transition. 

This program was developed in Melbourne, Australia. It was developed at the Royal Children’s Hospital in Melbourne. Melbourne is home to 5 million people. One study is about the development of the program; the other study evaluated the program. 

About the first study:

They used survey and interviews to understand the needs around transition. The study focused on Autistic patients with dual disabilities, and they developed a healthcare transition program for teens and young adults. 

Study questions. 

• What makes it hard to transition from pediatric to adult healthcare? 
• What support is needed for families and patients? 
• What support is needed for medical providers? 

Family surveys. 

Researchers sent a survey to 18 families with Autistic youth. 18 caregivers and one Autistic young adult answered the questions. 

Interviews. 

They interviewed 62 people who are not caregivers or Autistics. These people included primary care doctors, mental health doctors, government policymakers, special educators, and other health providers. 

Common themes in the research results.

Common themes about healthcare transition and unmet needs included:

• A need for case management, 
• A need for a transition program, 
• Need for pediatric and adult providers to share care, and 
• Medical records are not shared between providers. 

More common themes in the research results is:

• A lack of services and experts for Autistic adult patients
• Adult care doesn’t meet needs
• Caregiver anxiety, and 
• A need for caregiver training. 

So they developed a new model of care called the Fearless, Tearless Model healthcare transition service. This model consists of a single transition process with the family at the center, caring for both young adult and family needs, managed by a transition manager as a single contact. 

This new model of care, the Fearless, Tearless Transition Program:

• Developed shared care, which means taking turns visiting pediatric and adult providers
• Trained community health providers
• Offered a web portal with information for providers, and 
• Made assessment tools available for all to use.

This new model of care, the Fearless, Tearless Transition Program, also created a network of adult psychiatrists expert in dual disability, and created a Community Resource Guide for Melbourne. 

About the second study, which consisted of an evaluation of the program six months after transition. 

• 102 Autistic youth took part in the shared care program. 
• 33 pediatric and 80 adult providers worked together to share care. 
• 22 caregivers completed the survey on the transition of their Autistic youth. 

Details on the process. 

At age 12, the pediatric provider talks to the teen about transition, and the family chooses an adult provider. 

At age 15 to 18, youth receive the transition service. From age 15 to 18 transition service, the pediatric provider completes an evaluation of the youth and parents’ needs, the patient takes turn visiting pediatric and adult providers, and the transition service helps to create a transition plan. They also provided a communication book and tools. 

Outcomes: 

What the caregivers completing the survey said:

•  67% found the program somewhat useful or useful. 
• They felt more prepared for the transition to an adult provider. They were not feeling more confident, however. 
• The first discussion of transition happened at the age of 16. 

More outcomes: 

What the caregivers completing the survey said:

• There was no change in caregiver stress.
• There was little change in the number of young adults who had an adult provider.
  •  Before the clinic, the number was 82%.
  •  After the clinic, the number was 86%. 

Outcomes:

How concerns and needs changed after attending the transition clinic:

• Most improved were self-care, home and family life, lifestyle including diet, exercise, et cetera, and funding. 
• There was some change in work, emotional wellbeing, or mental health, friends and activities, and 
• Little or no change to sexual health. 

Limitations.

One of the limitations to the study is a low rate of response. Another limitation is that there’s no report from teens, just caregivers, and there’s no report from providers. There’s also no comparison group.

New additions to the program include peer-to-peer adolescent support groups and family support groups.

This is the end to the Fearless, Tearless Transition Service. Your next step is going to be to use the link in the email to confirm that you’re done with this module.

References. 

Culnane et al, published in 2020, “Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health,” published in the Developmental Medicine and Child Neurology Journal.

Also, the second study was conducted by Culnane et al, published in 2022, “Carer perspectives of a transition to adult care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities,” published in Childcare Health and Development.

That’s it. Thank you. We’ll see you in the next study.

Adapted Abstract

Background and Aims: These articles describe the Fearless, tearless transition model for autistic adolescents with dual disabilities.

Methods and Results: In the first study, 18 caregivers and 1 young autistic adult completed a survey, and 62 healthcare stakeholders were interviewed to understand the barriers to healthcare transition. The Fearless, Tearless Transition model was created to address the barriers identified. The model includes a transition manager, clinical assessments of needs, shared care between pediatrician and adult providers and adult providers education to develop expertise. In the second study, 22 caregivers of autistic adolescents with dual disabilities completed a survey before and at least 6 months after receiving the transition support. Preparedness for transition was significantly improved and 67% found the program useful. There was no change in confidence to transition or in caregiver’s stress. The areas of need most improved after the transition were self-care and home and family life while no change was reported in sexual health concerns.

Conclusions and Implications: A transition model that includes a transition manager and communication between pediatric and adult providers has the potential to support the healthcare transition of autistic youth.

Findings

• Preparedness for transition was significantly improved.
• There was no change in confidence to transition or in caregiver’s stress.
• Satisfaction with the program: 67% reported the transition service was useful.
• Self-care, home and family life, lifestyle and funding were the most improved areas of concern.
• Sexual health, friends and activities, and mental health show little to no improvement.

Summary

This summary includes 2 studies on the development and on the evaluation of the Fearless, Tearless Transition model. The Barriers to the healthcare transition identified in the first study included anxiety of caregivers due to difference between pediatric and adult care, variability in transition planning, lack of communication in the healthcare system, and lack of capacity and expertise in adult providers to care for autistic young adults with dual disability. Dual disabilities are defined by having an intellectual disability and/or autism spectrum disorder (ASD) and co-existing mental health disorders like anxiety disorder or depression.

The Fearless, Tearless Transition model aims to improve caregivers’ satisfaction, reduce anxiety regarding transition, and improve communication between providers during the transition period. The model includes a transition manager, an assessment of needs completed by the pediatrician, shared care and communication between pediatrician and adult providers and education to develop adult providers’ expertise.

The model includes pediatricians who start talking about transition of care at the age of 12.  Between the ages of 15 and 18, Autistic youth attend a transition visit. Their needs are assessed by the pediatrician together with the transition manager. The assessment tools include (1) Modified Health of the Nations Outcomes Scale—Learning Disability (M-HoNOS-LD), (2) Modified Supervision Rating Scale (M-SRS), (3) 12-year-old checklist and (4) Autism Parenting Stress Index (APSI). A transition plan is created based on the assessment results. The Autistic youth alternates visits between the pediatrician and the general adult provider until transition is completed.

The second study is based on surveys of 22 caregivers completed before and at least 6 months after receiving the transition support. This model was rated as somewhat useful or useful by 67% of caregivers. They felt significantly more prepared for transition after the intervention. There was no significant change in confidence to transition or in caregivers’ stress. Areas of concerns improved compared to the initial survey were self-care, home and family life, lifestyle, and funding. There was little to no change in sexual health. Areas of concerns including friends and activities and emotional health showed less than 10% improvement.

Real-World Implications

A transition model that includes a transition manager, needs assessment, communication between pediatric and adult providers and provider education has the potential to support the healthcare transition of autistic youth. Additional support addressing specific areas of sexual health, friends and activities and emotional and mental health is needed.

Limitations

• The studies include a small number of participants.
• Non-English-speaking patients were excluded from the study and may experience greater barriers to transition.
• There is no measure of the Autistic young adult’s or provider’s perspective of the impact of the transition model.

The Fearless Tearless Transition Support Service (.pdf)